The Mighty Logo

10 Ways to Travel Fearlessly With IBD

If there’s one thing that can rear up anxiety’s ugly head, it’s traveling. For those of us who live with inflammatory bowel disease (IBD), the nerves can be especially hard to navigate. At home, we know where the bathrooms are. In our town, we know which ones will be available. But throw me into an airport with long lines, take-offs and landings, long walks in between restrooms, and weird food, and I’m definitely clinging to my breathing exercises for dear life. The worst part? It’s not even always that I need to go; it’s the anxiety about possibly needing to go that plays tricks on my body and mind.

Raise your hand if you can relate, even if it’s a road trip. Sure, “the world is your toilet,” but how many of us truly can relieve ourselves on the side of the road without getting stage fright? It’s more like waiting for the next rest stop in 60 miles or choosing to use the dingy gas station off that rural exit. Le sigh. I wonder what it’s like to not constantly be worrying about a toilet when you’re on vacation, but I digress.

If you could use some reliable tips on how to calm the nerves and navigate travel when living with IBD, I got your back.

  1. When you see a bathroom, try to use it. Don’t make the same mistakes I’ve made, where you don’t really have to go right now … but you’ll have to go in 10 minutes during take-off. If you pass a toilet, always try.
  2. Don’t underestimate the power of breathing. Taking long, slow deep breaths not only distracts your mind but can also calm down your body’s anxiety. 
  3. Pack toilet paper. I’ll be the first to admit that a “side-of-the-road” situation has happened, and toilet paper can come in handy. Whether you’re driving, walking, flying, taking public transport, always bring some, even if it’s just back-up for a public restroom that’s out.
  4. Don’t be afraid to ask. I’ve been hit with so many “we don’t have a public restroom” responses that I’ve lost count. That’s the worst thing they could say, but the best thing that they can do is listen when you sound and look distressed. I’ve had workers take pity on me and let me use their super-secret toilet before. Don’t be afraid to speak up when it’s an emergency!
  5. Plan your activities accordingly. For example, if you’re doing museum tours, bathrooms can often be way back in the lobby. Or if you’re going to be on a long bus ride to a destination, double check if they have a bathroom. If access is going to be limited (or non-existent) for an extended period of time, make plans to go before, during every rest stop, right when you arrive, before tours start, during any breaks … you get the idea.
  6. Consider ordering a “I gotta go!” card. Our friends at Girls with Guts offer these cards, which can be used in 17 states that have passed Ally’s Law. The unfortunate part of that law is that a) not everyone knows it exists and b) even if they do, some may want that proof that you “qualify.” That’s what this nifty card is for; carry it in your wallet.
  7. Always pack extra underwear. Ulcerative colitis or not, I always do this. My mom instilled that in me since I was young, because you don’t want to be delayed or canceled and turning your underwear inside out! 
  8. Bring any medications in your carry-on. If some qualify as liquids, tape your prescription on the front so that TSA can clear it. I’ve done this many, many times before with my enemas, and I never had an issue getting onto the plane. 
  9. Research menus and food beforehand. Especially if you’re traveling with a group who might not have the same dietary restrictions as you, it’s important to know where you’re eating and if anything works for you. One secret trick? Bring your own snacks and eat beforehand; you can then get away comfortably with a smaller dish.
  10. Don’t forget to have fun! I know, I know – easier said than done. With the bathrooms constantly weighing on the back of our minds, it can feel hard to relax. However, traveling can be enjoyable if you plan accordingly and keep an open mind! One thing I love to do during vacations is plan buffer days, where my husband and I do a fun activity in a place where I know there’s plenty of access. That helps me feel in control, enjoy the moment, and also feel secure in my ability to use the bathroom if I need it.

As summer slowly approaches, I hope you find these tips helpful with any travel plans!

Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home